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Wednesday, June 20, 2012

Post Surgery Check Up, Non Lyme Friendly PCP

Yesterday I went for my post surgery check ups. First up to bat was my PCP. Believe me, I wish I had a bat. She was bent nosed about the fact that I was feeling better from the gall bladder removal. She was the one who thought it was indigestion, I told her it was worse than that, hmm. The patient is ALWAYS right. The first thing she said upon entering the room was 'So, you're all better now?' with more sarcasm than I could believe. So I responded with how my stomach was feeling a lot better, virtually no pain. Told her that I came off of the Yaz because it was causing severe suicidal type depression and anxiety and not helping the cramps or acne or cyst pain. Instead I just bled every two weeks. She didn't have any comment about that. Then I told her about my heart rate averaging about 120 and 100 at rest. Informed her that I started adrenal supplement to help with tachycardia symptoms and fatigue. She responded with 'So you're just adding another medicine then?'

With all the patience in the world I tried to ignore the comments and sarcasm, in her tone of voice, and asked if she knew anything further about disability. Our meeting ended with her replying that she knew nothing about disability or the prerequisites for applying and she didn't think I needed disability, and instead I need to just 'get up and do schoolwork' because that will make it all better. Supposedly I don't need to drive or be on car insurance either, because it's not anything of concern to her that I wouldn't make it to half my appointments without my license. General consensus, she does NOT understand, wants nothing to do with the Lyme, does not believe I need disability, and treats me like a psychopath when my mother is not at the appointment.

My appointment with the surgeon went great though! Tajammul Shafique is by far the best doctor I have ever seen in my entire life. The nurse got me flowers and they all talked to me like they were my best friends! Dr. Shafique agreed that the surgery appears to have been a success and I don't need to return for any more appointments. For anyone that needs a surgeon: Dr. Shafique through LRGH in Laconia, NH or Gilford, NH Is the way to go! He revived the medical field in my eyes after a rough morning with a non friendly doctor.

Partners in Health and Teen Lyme Support Group

In New Hampshire, there is a program divided by communities for children with Chronic Illnesses. Lyme has recently been included in the definition 'chronic' and this program now includes me in their activities and offers me assistance. They are waiting for some paperwork back from my Lyme doctor but aside from that they will be able to provide a lot of help to me with disability, medical bills, recreational activities, and the new Teen Lyme Support Group they are starting for the Lakes Region. I was going to start a support group for teenagers and I may have posted on here about it before, but I was always too sick to initiate it. Now Partners in Health has secured a nice comfy room for us to all get together for two hours twice a month on Saturday Mornings. The plan is to call it the 'Lyme Lounge', and it will be a laid back support group type gathering on the first and third Saturdays of each month. On the third Saturdays, every other meeting, the parents can leave and go to the Lyme Support group at the Laconia Middle school for the time frame which would be 11am-1pm. That way us girls can have some time alone and get to really open up and the parents can connect as well. I really hope it becomes successful because a lot more people need to be educated about Lyme before this world really 'gets' it. I have been elected spokesperson for the group and I attend family council meetings to share how it's going and what may need improvement and will also be attending what is called the 'YAEH council'? It is supposed to get children active on educating the world around them on what it's like to be chronically ill. These few things should get me to where I want to be, advocating for teenagers disabled by autoimmune diseases.

Tuesday, June 12, 2012

Post Surgery Recovery, Lyme Symptoms After Clindamycin

The count up is in full swing. Today is 12 days post surgery, and this post will be a full blown analysis of my symptoms. Too many people have asked how the surgery has affected my Lyme symptoms and vice versa, and I'd like to quench everyone's thirst for more answers. Surgery is a traumatic experience for the body, nervous system and immune system. There's many characteristics of me being someone with auto immune dysfunction that affect my recovery. First of all, I'm on an IV medication that's trying to treat my symptoms of fatigue, depression, anxiety, joint pain, muscle spasms and weakness, headaches, hot and cold flashes/sweats, insomnia, light and sound sensitivity, and so much more. Charting my progression of those symptoms is more difficult over the course of my first month of this treatment when you are adding digestion irritation from pain killers, fatigue from the narcotics and trauma induced with surgery, and of course worsened headaches from stomach pain, fatigue, narcotics, etc. It's a snowball effect caused by the initial problem, the tick borne illnesses! My gall bladder probably worked fine before Lyme and Bartonella's treatment of Rocephin through IV clogged it up. I may have never needed surgery to remove it if I hadn't introduced Rocephin due to the Lyme. What a cycle.

Another thing to keep in mind is that I have experienced prolonged adhesive sensitivity since the IV treatment. I could have had it sooner and just not noticed until my skin was red and itchy from the IV dressing. I have since used an IV 3000 dressing to reduce the allergy and been fine in the Picc Line area. However, the band aids and dressings for the stomach incisions caused worse pain and irritation than the incision itself did. What a mess! Below is a picture of the four incisions, three of them surrounded by bright red almost welted skin where the adhesive touched. As of today I decided to not use any band aids to reduce those problems. In a week I'll get another picture of my stomach and how the scars are coming along.

On top of all that I have been found to scar hypertrophically, an uncommon way that the body can scar for some people where the skin over the scar is raised and red and firm unless manually softened with therapy and vitamin E based applications. Hyper trophic scars are not common for everyone, but are similar to scar tissue build up that can cause nerve pain and experienced by many Lyme patients whose immune system is affected. (

Last but certainly not least is the risk after surgery of infection that can be fatal, thanks to the low immune system Lyme gives somebody. I was concerned about this but seeing as they glued my incision closed and I didn't get the dressing wet enough to change it every day, It lessened exposure to the air and I have been able to keep the stomach clean and dry. There is a little bruising near my belly button but it's looking good and smooth. As far as the Bartonella and Lyme symptoms go, I slept literally all day yesterday and caught up on much needed rest from the past two weeks of stress on my body. Today I am more energized and appreciating my sublingual b-12 in 5,000 mg tabs That significantly increase my general well feeling. I have rested, made sure to keep up with my medicines, and taken magnesium and b12 daily. Those are the only two natural supplements that I notice a difference with. I sleep better, wake up happier, have more energy, fight less depression, and feel lighter. On the Clindamycin, I have recognized a noticeably clearer ability to process, think, and concentrate. I am still working on the memory and motivation, but that will take time and rest. I have started reading more to wake my brain back up and we are looking into a tutor to generalize my needs and get my education back on track. We are also probably applying to disability since I can't work and do school and get better. I'm just not a super woman yet.

Horse Show

On day 10 after Gall Bladder surgery I was up early and gathering my gear for my first horse show of the season. It wasn't a horse show like many, because this was a MINIATURE horse show and you don't ride minis! All the animals were beautified for the weeks ahead of the show and the day before and day of they were perfected for the ring and judges eyes! Showing is something I'm allowed to do with the miniature barn I'm allowed to visit frequently and help out at. Me and the owner, Wanda, have a great connection and we are like family! 'My horse', Miracle, is a mini that she keeps at her barn and lets me see as often as I need or want to. If I'm feeling well I'll try to be there twice a week or more, cleaning out the barn, refilling water buckets, taking the babies for walks to get them used to halters and brushing down any in my path. There's quite a few of them, at one point close to 40 of them!

The show went well, I stayed in the shade, tried to remember to relax, and went in three classes. A show is split up into multiple classes where the judge looks for different things in each class and judges accordingly. You can enter more than one in a day, and enter different classes with different horses. In the last classes of the day, called Liberty, you have 1:30 to dance with the horse to music of your choice without touching them with the whip, while the judge looks for teamwork, enthusiasm, changes in gaits (speeds) and directions, and the animals cooperation. You then have 3 minutes to get the halter on the horse and lead them out. Miracle ran for the majority of the class, more than she usually does or ever has before, switching directions even though not as frequently as I wished. At the end she ran right to me playfully taking another lap and putting her head into the halter for me. Talk about teamwork. The video will be on my mother's youtube channel (alagash98) and probably on my facebook accounts as well.

Heres a picture of me and my best bud waiting for class #2, and some of us just chilling!

Wednesday, June 6, 2012

Lyme Disease Conference and New Book to Read

I forgot to put a post on how the Lyme Disease Conference in Laconia went! Nancy Bourassa did a great job and I got to see Violet Snook's new book that she wrote on epilepsy and Lyme Disease. She is leaving Friday to spend 3 weeks in Pennsylvania training with her new seizure alert dog. I think it's a great experience for her! Just bought a copy of it today, it's called 'Behind the Artists Eyes'.

At the conference, I got to see many familiar faces and listen to Julia Greenspan speak about the connections of Lyme being worse for females than males. Different body types, attitudes, genders, and even races process things differently from one another, including how to combat and respond to the Lyme bacteria. All the speakers did a great job, I had to leave before hearing the last one speak which was my own MD, as I wasn't feeling well. I was in the wheelchair struggling to perform the maneuvers necessary to step forward for the following two days afterwards, until I had the gall bladder attack the second time and ended up in the hospital. Thankfully I'd been walking that day so I didn't show up to the hospital in a wheelchair and have to explain that. They actually used my Picc line for the first time to draw blood and give IV infusion of medications which made me so happy.

So seeing as this post has been sort of all over the place, back to the main point. Here are some pictures of me at the Lyme Conference interacting and gaining even more valuable relationships. In one picture, I am being recognized as the 'Famous 20/20 girl' in front of the crowd. The others were with fellow Lyme inflicted people and of course, the first one with the boyfriend I got into a Lime green shirt. :)

My good friend Cathy!

Lime green toe nail polish, sharing is caring.

Entrance way, greeting new people.

Monday, June 4, 2012


This is such a blessing. My first car as a teenager after shopping patiently for two years, and taking 8 months to complete drivers ed and get my license. We shopped all day long on Memorial day, trying to find good deals and looking in trailer parks on the side of roads, etc. for the perfect car. We wanted something with automatic transmission, high gas mileage, great safety ratings, lots of space inside for skis and family, and under our price range. We left the house with our savings of $3000 looking for something for $2000 so we would have enough money to put work into the vehicle. We were in no rush, setting our hearts on open and looking at places all over the lakes region and down to Concord and back. After giving up from an eventful day, we saw a vehicle across from a stop sign on the way home and my mom recognized the for sale sign in the drivers window. We pulled up to a silver, 2005 Dodge Stratus with less than 104,000 miles on it and a price tag of $2,200. The next day we took the car to the mechanic and discovered it needed over $700 of work. The woman offered the car to us for $1,600. What a great deal. The car books for $5,500 and after doing the brake work and getting used summer tires for it we will own it for probably under $2,500. What a great first car. It's sporty looking, in clean shape, with a 2.7L V6 engine to assure safety and multiple airbags. I am so excited, after the car is registered and installed I hope to be able to drive it, but I'm also waiting to recover from surgery too. It should be fairly good on gas, getting around 26 or 28 mpg. Here's some pics!

Surgery Recovery and Response to Clindamycin (First month)

It's four days after surgery and I'm on zero pain killers. My head hurts and my stomach is aching with sharp radiating pains, but it's not any worse than other pains and being on narcotics is bad for your stomach and causes additional problems so I'd rather tough it out from here. I had a rough nights sleep last night on no medicine but part of that was due to being stressed out because of a relationship upset. Yes, I'm a regular teenager with average relationship struggles that come and go and sometimes can't be overcome and can end a great thing at a not so great time. On the day of the surgery I came home before 3 pm and was on Tylenol Codine and ibuprofen and whatever else they gave me through IV. I got to lay in my comfy bed and be in great pain. The next day I rested and spent time with Mike. I was in so much pain that he had to do pretty much everything for me including sitting me up since my abs hurt so bad, and feeding me. I couldn't cough, standing up caused me to be in so much pain while my stomach adjusted that I couldn't breath, and my abdomen was full of carbon dioxide from the laparoscopic surgery. There is four incision and one big one along the bottom of my belly button which makes five (there are two in my belly button I believe). Today I am feeling much better, my head is killing me and my stomach hurts worse when I move but in general I am much better than the past few days and I am happy for that. I see my Lyme doctor on Wednesday to discuss how the clindamycin is working through IV. I believe it has reduced headaches and brain fog and maybe even generalized pain, but I need more time to figure it out. Hopefully he won't change it for another month. Next post, on the new car!